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Whey powder: any CFS issues/benefits?

Sasha

Fine, thank you
Messages
17,863
Location
UK
I'm virtually bedbound and have been gradually putting on weight. I've been trying to go back to sticking better to a long-term diet - which I believe is also known as the "Zone Diet" and similar to the maintenance phase of the Atkins diet - in which you eat meals in which your portion sizes of protein (meat, fish, eggs) are larger than those of carbohydrate (fruit, grains, pulses). The idea is that you don't get an insulin spike from the carbs that would cause you to lay down fat and put on weight.

I find I get hungry last thing at night and think that I might try again drinking a protein shake as well as my late night snack because it will be presumably be high in satieity (being mostly protein).

I just had a look on Wikipedia and was surprised to see that whey protein is supposed to have anti-inflammatory properties and is being looked at in relation to benefits for heart disease and cancer. There's some discussion of glutathione, which I've seen discussed elsewhere on this board.

Does anyone have any views on whey protein for PWC? Milk allergies aren't an issue for me but may be for others, of course. I used these protein powders for about six months a couple of years ago without finding any benefit other than probably helping regularise my blood sugar levels.

Just curious because of these Wikipedia claims!
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Whey powder was a total no-no for me. Even at very small dosages it made me weak with more "viral" symptoms like sore throats, glands etc. At the time I was encouraged to keep taking it. People said that these were "herx" reactions but I never improved on it.

The current thinking is that for some of us the Methylation cycle is a problem and that is why I couldn't tolerate the whey. My Glutathione levels didn't raise.

Not sure what else to say as some people do very well on Whey and do raise their Glutathione.
 

L'engle

moogle
Messages
3,196
Location
Canada
I don't know if it has specific CFS benefits, but I use it a lot. I get a brand (Kaizen) that is sweetened with stevia. With fatigued adrenals, I need protein several times a day. I get blood sugar spikes if every snack is a carb, and whey protein is an easy clean tasting form of protein (since I don't feel like eating lentils or herring or steak right before bed or first thing in the morning). I crave it a lot but I'm not sure if that's just because it tastes good and is something that I don't have to add salt to. I think tis a good dietary addition for ill or healthy people, if you can tolerate it. ukxmrv, thanks for sharing your experience with it, I'd never heard of anyone having such a bad reaction to whey.
 

richvank

Senior Member
Messages
2,732
Hi, Sasha.

I'll give you my views on the whey protein issue in ME/CFS, for what they are worth.

First, in my experience, most PWMEs/PWCs report that they do better on a high-protein diet. I believe that the reason for this is that they are not able to burn carbs and fats for fuel as well as normal, because of a partial block of aconitase in the Krebs cycle, resulting from glutathione depletion. As a result, they burn amino acids from protein more than normal. Some amino acids can enter the Krebs cycle downstream of the partial blockade, and transaminase reactions can convert one amino acid to another, with the help of vitamin B6 as a cofactor, so that they can be fed to the Krebs cycle and burned for energy, to supply ATP.

If PWMEs/PWCs continue to consume carbs or fats at the levels they did before they became ill, significant amounts of these will be converted to stored fat, and they will gain weight, but still be starved for fuel.

Among the available proteins, whey protein has the best match to the needs of the human body, in terms of its relative proportions of the amino acids that make up protein.
Egg protein used to be the best, before whey protein was commercialized a few years ago. The only way I know of to get protein with a better matched amino acid composition would be to become a cannibal, but that has certain drawbacks! :)-)

There are three grades of whey protein. The cheapest is the type sold in the big plastic jars. It is a byproduct of cheesemaking. The curds go into cheesemaking, and the whey used to be dumped, before Dr. Gustavo Bounous, then at McGill University in Canada, showed that it was high-quality protein a few years ago. After that, it became a profitable product. This first grade has been through pasteurization and acid treatment in order to separate the curds from the whey, and the proteins have become denatured, i.e. their molecules no longer have their natural shapes. Also certain sensitive proteins have been broken down, including lactoferrin and the immunoglobulins, so they aren't present. Also, the cysteine in the proteins has been oxidized to cystine.

The second grade is the so-called undenatured whey protein (which is a misnomer, because whey protein that has become denatured can't be "un"-denatured. A better name for this grade is whey protein isolate.) This is also a byproduct of cheesemaking. The starting material has been through pasteurization and acid treatment. However, it is more refined than the first grade. It has been through some filtration, so that a lot of the damaged protein fragments have been removed. Some of these products have had lactoferrin added back in. However, they are still missing the immunoglobulins, and the cysteine has been oxidized to cystine.

The third and highest grade is the truly nondenatured whey protein. This is not a byproduct of cheesemaking, and it has not been subjected to high temperatures for pasteurization or to acid treatment. These proteins still have their natural shapes. The cysteine has not been oxidized to cystine. Lactoferrin and the immunoglobulins are naturally present. This grade of course costs the most, but it also has additional benefits, especially in terms of helping to control unfriendly bacteria in the gut, and in supporting the immune system. The unoxidized cysteine is readily absorbed by the liver, and can be used to make glutathione, while the oxidized form cystine is not well-absorbed by the liver, and is mostly processed by the kidneys. Some is returned to the blood as cysteine, and can be used by the liver.

The available truly nondenatured whey protein products include ImmunePro, RenewPro, True Whey, and Whey to Health.

One difficulty with whey protein in ME/CFS is that some people with this disorder cannot tolerate casein. This is also a problem for many people who have autism. Casein is the protein in milk that goes into the curd fraction, used for making cheese. However, the separation is not perfect, so that there can be a small amount of casein in whey protein. For this reason, most of the autism community stays away from whey protein. Some people with ME/CFS do well with it, and others can't tolerate it. The lack of tolerance could be due to the casein reaction, or to the fact that glutathione comes up and stimulates the immune system to begin fighting pathogens, or because cysteine rises too high and auto-oxidizes, or because the sulfite oxidase reaction becomes overwhelmed. I don't think we have ever been sure about the cause of the intolerance. It may be different for different people.

Taking nondenatured whey protein is a way to build glutathione, but it isn't a permanent way to do that. If a person stops taking the whey protein, their glutathione levels will drop back down. This was a puzzle to me for five years, until Jill James et al. published their paper in autism in late 2004. At that point I became aware that a partial block in the methylation cycle, upstream of glutathione synthesis in the sulfur metabolism, was preventing glutathione from staying up. This is true in autism, and also in ME/CFS, and it is what makes ME/CFS a chronic disorder, in my hypothesis. We have since found in both autism and ME/CFS that if the partial methylation cycle block is lifted by appropriate targeted nutritional supplementation (the key supplements being folates and B12 of appropriate forms and dosages), glutathione will come up automatically, without direct efforts to raise it.

So my view on whey protein in ME/CFS is that if there is not an intolerance in a particular person, it is a good source of high quality protein. The truly nondenatured grade is the best, because of the additional attributes it has, beyond simply having a good amino acid makeup for the human body, and beyond simply supplying a fuel that a PWME/PWC can readily burn to make ATP, which is used to contract muscles, power nerve impulses, and drive a wide variety of reactions in the biochemistry of the cells. Although I haven't heard from people who have tried it, I think it could be used in conjunction with the methylation treatments to assist in building glutathione. If there is not an intolerance in a given person, it might help to counter the excitotoxicity that often becomes more severe initially during methylation treatment (anxiety, insomnia, a "wired" feeling, hypersensitivity of the senses).

I hope this helps.

Best regards,

Rich
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
What Dr Cheney used to say about Undenatured whey http://www.ei-resource.org/articles...rome-articles/dr.-cheney-on-undenatured-whey/ . He's thou apparently changed his mind about it.

For myself thou, Undenatured whey (something my own CFS specialist recommended... an Undenatured whey brand called "Isowhey Complete" was one of only two supplements (the other being B12 injections) which has ever helped me in the 14 yrs Ive had this illness.

I really suggest getting hold of some Undenatured whey and giving it a try. (It made me feel weller.. and was making me feel more energy, unfortunately after 2-3 weeks on it thou I become bowel intollerant of it so had to stop it thou it was really helping other symptoms).

To help in dieting.. it can be used as a daily meal replacement (like those diet shakes some people buy)
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Hi UKXMRV - sorry you're not able to use it! It's frustrating to hear of things that might be helpful and to be unable to take them.

L'engle - glad it helps you! Good to know it tastes nice as well as helping with blood sugar spikes - I've got careless with them recently.

Rich - thanks so much for putting such a lot of time into a very informative summary. It was really helpful and reminded me that when I initially went on this high-protein diet (which included a protein shake per day at the time, albeit the cheap stuff) I did in fact improve noticeably for about six weeks or so, at which point I plateau'ed and (if memory serves) crashed from overdoing it, and never regained the improvement.

Your summary and Tania's (thanks, Tania!) experience and useful Dr Cheney link have persuaded me that it would be a good idea to not only get back onto whey powder but possibly up the dose and go for the best quality.
:thumbsup:Really, thanks, everyone - it's ages since I've been able to find something that seemed likely to help and since I've already had some limited success on a low-dose, low-quality version of this I'm hopeful that it might be helpful.

I've only been able to find any of the nondenatured whey powders that Rich mentioned in the UK - Source Natural's True Whey - and it's via Ebay which doesn't inspire confidence, plus it's a jaw-dropping 33 a go including p&p. Does anyone know where to find any of them - ImmunePro, RenewPro, True Whey, and Whey to Health - from reputable online sellers at reasonable prices in the UK? I've tried Holland & Barrett, Boots and Amazon with no luck and a site called MyProtein (for athletes) looked reputable and had a product called "True Whey" but they appear to manufacture it themselves - I don't think it's the one Rich means.

I've ordered the Ebay one for now but I'd like to buy from a specialist supplier for reasons of quality assurance if possible!
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I used Immunepro but I needed to import it from abroad which was expensive. Had a terrible reaction to it and a bad townturn in health.

Wishing you all the best

XMRV+
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
Rich - Thanks for the good explanation on the difference between the whey proteins. I have read several other explanations, but they always stopped with the difference in "concentrates" and "isolates". Isolates was always deemed to be the better because it was more pure protein (less fat and carbs) due to microfiltration or ion exchange. Everything is catered towards the body building or performance market.

I felt like there was a higher form that would be better suited for "healing" our bodies. The word "nondenatured", instead of "undenatured", looks as if it truly seperates this process from the rest of the pack.

Thanks
 
Messages
3
Hi all,

I used whey protein in diet shakes for 2 years with both mildly improved wellness and successful weight loss.

I had to stop taking it due to casein problems and I miss it. I'm sure I do better on a high protein low carb diet. It also prevented my carb cravings.

I'm now taking rice protein powder with some success but I'm unsure of any potential problems with it. I would appreciate any advice. (I avoid soy protein because of potential oestrogen problems.)
 

Crappy

Senior Member
Messages
113
Location
TX
I have used several types over the years; while the products like ImmunoPro digest easier they can send you to the poor house if that can happen for you. I have used many protein products over the years. What I know is all products if Bovine origin can produce immune responses to varying degrees, and we all have enough of that going on. Egg has a good profile but it too can stimulate an immune response if you are so inclined. You have chosen a good product for least immune interference in my experience. I use Goat Milk Powder, and use half Rice and half Goat; it gives a better balance with the least immune arousal. If your goal is Glutathione enhancement, go with a Liposhperic form like de Meirleir recommends, or just low dose sublingual reduced like Source Naturals make. My two cents.

Your instincts are right about Soy.
 
Messages
3
Thanks Crappy. That's really helpful info. I'm already taking the Lipospheric Glutathione KDM recommends so that's not an issue. I need the protein in my diet as I'm very limited in what food I'm able to tolerate.

One thing I realised I hadn't mentioned is that the rice protein I use is enhanced with spirulina which it says on the box is also high in protein. Could this cause an immune interference? The whey protein shake I was taking was fortified with nutrients and I was trying for that with the rice protein too.

Quick question: what do you mean by the better balance given by combining the goat's milk with the rice protein? Just wondering if I should be doing that too? Don't know if we can get goat's milk powder here, though.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Hi all,

I used whey protein in diet shakes for 2 years with both mildly improved wellness and successful weight loss.

I had to stop taking it due to casein problems and I miss it. I'm sure I do better on a high protein low carb diet. It also prevented my carb cravings.

My experience with whey is quite similar to yours thou i only took for a short time.. improved wellness and some weight loss (thou im not too overweight) .. but then after a while I become intollerant to it (incontience) possibly due to something like the casein.

I never tried rice protein powder as you dont get glutathione from it which helps to correct the common issue of glutathione deficiency (hence said to help a bit the CFS.. it helps the methylation cycle). Undenatured whey is recommended for CFS due to the glutathione produced as the body breaks it down.

I cant see any issues with a rice based product unless you have an intollerance to it.

If you do better on high protein, low carb diets... be aware you could have an issue with hyperinsulinemia (body producing too much insulin in response to carbs.. this will make you unwell or not as well whenever you eat too many carbs).
 

LaurieL

Senior Member
Messages
447
Location
Midwest
Both my son and I have tried again and again, whey protein or amino acid liquids and supplements. We can't touch them. After ingesting them, we go into a "stupor" and the need to lie down and go to sleep cannot be avoided. Almost induces a narcoleptic reaction in the both of us.

It also caused the both of us to gain weight.

Laurie
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Whey for glutathione?

Both my son and I have tried again and again, whey protein or amino acid liquids and supplements. We can't touch them. After ingesting them, we go into a "stupor" and the need to lie down and go to sleep cannot be avoided. Almost induces a narcoleptic reaction in the both of us.

It also caused the both of us to gain weight.

Laurie

I would love to both gain weight and be able to sleep better, but I know we're all different, and react differently to so many things.

My question for Rich, and anyone, is, would whey protein be an 'okay' supplement to try while one is trying to slowly -- and I do mean sloooowwwwwly -- implement the methylation protocol -- especially because of my 'aconitase' issue, where I'm not using carbs or fats (or much protein) for fuel?

I used to take whey 3-4 days a week, and was certainly doing better then (last year and prior) than I am now. I've lost probably 6 pounds in 3-4 months, and was already very underweight.

Thanks in advance,

Dan
 

liverock

Senior Member
Messages
748
Location
UK
Hi UKXMRV - sorry you're not able to use it! It's frustrating to hear of things that might be helpful and to be unable to take them.

L'engle - glad it helps you! Good to know it tastes nice as well as helping with blood sugar spikes - I've got careless with them recently.

I've only been able to find any of the nondenatured whey powders that Rich mentioned in the UK - Source Natural's True Whey - and it's via Ebay which doesn't inspire confidence, plus it's a jaw-dropping 33 a go including p&p. Does anyone know where to find any of them - ImmunePro, RenewPro, True Whey, and Whey to Health - from reputable online sellers at reasonable prices in the UK? I've tried Holland & Barrett, Boots and Amazon with no luck and a site called MyProtein (for athletes) looked reputable and had a product called "True Whey" but they appear to manufacture it themselves - I don't think it's the one Rich means.

I've ordered the Ebay one for now but I'd like to buy from a specialist supplier for reasons of quality assurance if possible!



I live in the UK and order Source Naturals True Whey from Iherb, one of the largest sources of supplements in the US for 14(as of October 2011)

http://www.iherb.com/Source-Naturals-True-Whey-Premium-Protein-Powder-16-oz-453-59-g/8180?at=0
.
First time customers can get $5/3 off this price first purchase by quoting LIV622.

No VAT tax is payable on items under 15 from 1st November 2011 and shipping for a one jar parcel would be either:

INTERNATIONAL AIRMAIL average 10 days no tracking but very reliable for $4/2-50 or

DHL average 2/6 days with tracking for $12/7-50
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I live in the UK and order Source Naturals True Whey from Iherb, one of the largest sources of supplements in the US for 14(as of October 2011)

http://www.iherb.com/Source-Naturals-True-Whey-Premium-Protein-Powder-16-oz-453-59-g/8180?at=0
.
First time customers can get $5/3 off this price first purchase by quoting LIV622.

No VAT tax is payable on items under 15 from 1st November 2011 and shipping for a one jar parcel would be either:

INTERNATIONAL AIRMAIL average 10 days no tracking but very reliable for $4/2-50 or

DHL average 2/6 days with tracking for $12/7-50

Thanks again for this - I've just placed an order for one tub and used that discount code.

I'm wondering whether to order more tubs in one go in future, if it's cheaper - is the VAT our (UK) VAT? At what point does it get charged? I'm a bit clueless about this stuff.
 

u&iraok

Senior Member
Messages
427
Location
U.S.
First, in my experience, most PWMEs/PWCs report that they do better on a high-protein diet. I believe that the reason for this is that they are not able to burn carbs and fats for fuel as well as normal, because of a partial block of aconitase in the Krebs cycle, resulting from glutathione depletion. As a result, they burn amino acids from protein more than normal. Some amino acids can enter the Krebs cycle downstream of the partial blockade, and transaminase reactions can convert one amino acid to another, with the help of vitamin B6 as a cofactor, so that they can be fed to the Krebs cycle and burned for energy, to supply ATP.

Ohhhh, thanks, Rich, you answered something that's been puzzling me for years. My naturopath at the time, too. Here my digestion was impaired but I told him, no, I had no problem digesting red meat and other proteins, but I had a problem digesting carbs. I thought, maybe I'm wrong about that and confused, but no, I'm sure that I can eat red meat every day, no problem. If I don't eat red meat for a week I don't feel well.

MEs/PWCs continue to consume carbs or fats at the levels they did before they became ill, significant amounts of these will be converted to stored fat, and they will gain weight, but still be starved for fuel.

Bingo, though I get some energy from good fats and don't gain weight from them, only if I eat too many carbs, especially grains.

The available truly nondenatured whey protein products include ImmunePro, RenewPro, True Whey, and Whey to Health.

I did well on Immunopro and had the detox reaction.

One difficulty with whey protein in ME/CFS is that some people with this disorder cannot tolerate casein. This is also a problem for many people who have autism. Casein is the protein in milk that goes into the curd fraction, used for making cheese. However, the separation is not perfect, so that there can be a small amount of casein in whey protein. For this reason, most of the autism community stays away from whey protein. Some people with ME/CFS do well with it, and others can't tolerate it. The lack of tolerance could be due to the casein reaction, or to the fact that glutathione comes up and stimulates the immune system to begin fighting pathogens, or because cysteine rises too high and auto-oxidizes, or because the sulfite oxidase reaction becomes overwhelmed. I don't think we have ever been sure about the cause of the intolerance. It may be different for different people.

I think I have slight casein intolerance. I was okay on the Immunopro, but had a slight reaction to other kinds of whey. I drink raw milk but too much of it or if I have it in the morning or on an empty stomach will give me a slight reaction. It's the same reaction I get if I eat the typical hybridized wheat of today.

Have you heard about the difference between A1 and A2 cows from Dr. Thomas Cowan with Weston Price? If so, what do you think:

The trouble is that we have the wrong kind of cows. It seems the black and white cows Holsteins and Friesians generally give milk that contains a small but significant amount of beta-casein type A1, which behaves like an opiate and which epidemiological studies have implicated in heart disease, Type 1 diabetes, autism and schizophrenia.


Taking nondenatured whey protein is a way to build glutathione, but it isn't a permanent way to do that. If a person stops taking the whey protein, their glutathione levels will drop back down. This was a puzzle to me for five years, until Jill James et al. published their paper in autism in late 2004. At that point I became aware that a partial block in the methylation cycle, upstream of glutathione synthesis in the sulfur metabolism, was preventing glutathione from staying up. This is true in autism, and also in ME/CFS, and it is what makes ME/CFS a chronic disorder, in my hypothesis. We have since found in both autism and ME/CFS that if the partial methylation cycle block is lifted by appropriate targeted nutritional supplementation (the key supplements being folates and B12 of appropriate forms and dosages), glutathione will come up automatically, without direct efforts to raise it.

Doing this thanks to your research, thanks so much for your efforts on our behalf.
 

linusbert

Senior Member
Messages
1,117
i would like to add some information about whey.


1)
at first, whey has the biggest insulin response than most other things one can eat, much more than pure glucose itself or even white bread.
so whey will kick you out of ketosis and might also contribute to weight gain due to high insulin.
ALSO as it does not contain sugar, it can lead to hypoglycemia. this is proven in studies.
it also works strong on your GLP1/incretin mechanism. it works like this hype medicine many people inject for weight loss. (which i did not tolerate at all, it saped me off my energy, where as whey was the opposite)

so if you get bad side effects within 15 to 30 minutes after you took it, you might react to the high insulin output and/OR the low blood sugar situation.

in that case, try to take your whey right before a carb rich meal or combine with sugar.

2)
as others wrote , non-denaturated mostly natural whey is the best.
manufacturers cheat and lie, double check your source.

3)
try GOAT whey instead of cow.
i cannot do immunePRO whey , i reacted allergic to it.
what i can take is goat whey, i use lsp goat whey which looks pretty good. non denatured, grass fed goats, no heating and FREAKING EXPENSIVE. 2kg cost like almost 100eur,
goat whey and milk have different allergene profile than cow milk. many who cannot use cow can tolerate goat.
it also solves pretty nice, at first it has big clumps we all know from protein powder, but leaving it in a glas of water for 1h almost disolves it completely.


why i had to stop my whey anyways,
- i started to smell after urine, suggesting my ammonia got to high
- after ingesting it, it gave me energy, reducing my main symptoms, but also gave me a high wired jittery feeling in the muscles. maybe due to high ammonia? or maybe due to too much glutamate from glutamin? (anyone knows a solution for this?)
- i seam to have a lot weight gain.